I’m still very troubled about the way that my home town medical center handled my case and probably that of all their hepatitis C patients. While the process of having a nurse practitioner be the medical professional of last resort may seem to be effective on paper, it did not work for me. This nurse practitioner was not equipped to give medical advice. She adequately described the standard of care treatment, and its repercussions and side effects, but with the current state of hepatitis C treatment, that should be only the beginning of any discussion. If a lay person like me can learn in a few months about the variety of experimental drugs that are available, it should not be difficult for a professional to understand and impart that information to a patient in a meaningful way. Indeed, in my opinion her failure to cover the option of a clinical trial in depth constitutes malpractice. If I did not have the ability to obtain an appointment with a specialist, the computer savvy to investigate clinical trials, and the freedom and money to fly to a variety of places to find a trial to enter, what would have become of me?
I finally have an appointment scheduled with my local hepatologist, though. After I was confident that I was starting the clinical trial in Virginia I emailed the medical center to request an appointment, and received a call from the GI department a few days later. The scheduler explained to me that actually the nurse practitioner was my medical professional and I should make my appointment with her. I said, I don’t want an appointment with her, I want one with the doctor. I actually had to say that twice. The earliest appointment I could get with the doctor, she explained, was six months away in late June. Fine, I said. Fine.